The Seizures seem to have started again after 4 months

We had a solid four months of no seizures. It was awesome. Exactly 4 months. From June 19th to October 19th. He had two small ones on October 19th, both at night. We kept him home from school the next day, but he did not have any more. Then again, on Tuesday, Novemeber 8th. This one was different, because he was at school all day, then with babysitting after school because I was in the hospital with my dad whos hip had come out of socket. About 10 minuets after I got home, while RIGHT next to Aunt Jennifer and I, he kinda dropped to the ground, looked at me with bewildered scared eyes, and then started to seize right there on the kitchen floor. It was a little longer then usual, but no more then a minuet. I was kinda glad it happened with Jennifer and Tim there. Tim was able to help me get him to the couch afterwards, and they were able to see him go through it, and then come out of it. They were able to see me be calm through it, and not stress or worry too much.

He had another one at 4 in the morning that night. Again, we kept him home from school, but he did not have any more seizures that day. And then less then a week later, Monday night, he had two more, one at about 11pm, and another at 2pm. This time we DID send him to school the next day, and he did not have any seizures at school. The main thing we have been noticing, are what leads up to seizures. The first two times, he was crazy wild at school, and then, sieuzres. This last time we was not crazy wild, but very, very, tired. Which is another sign they could be coming. I did try to email his doctor today, but she is out till the 17th. I'm not in a hurry to talk to her, I already know what she is going to say/do. We are managing fine, and they are so small, I'm not too worried about them at this point. Okay, gotta run!

Willow

No Seizures for a while....

Nothing happening, just inspired to write. It has been 2.5 months since Ben's last seizures, Fathers Day. It was a very bad one, as I wrote about, that ended in the hospital, but nothing since that day. Could it be the 1/2 tab of clonazapine we added during the day? Or is it the VNS doing it's thing? Whatever it is, I'm thankful for it. Ben has been crazy lately, not sure what it is. Seems he's more daring, more crazy. Sigh....... that's not a good thing for us. We will roll with it and deal with it, just as we have everything else. It's labor day today... all the kids are home. Hope nothing has been destroyed in the short time I have been sitting here writing. :-) Have I mentioned I love my kids.

Love,
Willow

Updates........

Well, a lot has happened since April. Or, more like a lot hasn't happened. :-)

So, after the last Post, Ben did not have Seizures for quite while. I thought it was more like 3 months, but I guess it was more like 2 months. He had his VNS placed May 2nd, and did not have any siezures for month before that, (wow, I thought it was longer, another good reason to have this blog), and did not have another seizure till June 7th. I remember that date because I had to go to a birth that morning. He woke at 4:30, had a seizure, then another, and then at 5:30 I got a call that my clients water broke. He had one more, all small, and off I went, thankfully Jason was able to call in sick. No More Seizures for the rest of the day. He had a couple more very small ones about a week later.

The VNS surgery went very well, and he healed up just fine. Although the scar on his neck is still pretty bad. I don't think it has done any good yet, even the Magnet doesn't seem to stop Seizures, but I think over time it will help him. At last I'm hoping, it may be hard to really tell.

Then on Fathers Day, which was June 19th, he had a really big one. This one was different as he had it while awake and playing. I could tell there was something going on with him, he fell but did not convulse, and then got right up, although he was wobbly. Then, he fell to the ground and had a longer then usual VERY STRONG seizure, probably around 90 seconds. I tried using the magnet over and over and it didn't stop anything. His post phase was unusual too. He seemed to keep coming in and out of it, and he kept stopping breathing, and I had to shake him to make him breath. It was terrifying, it's even hard to write about it. Jason was at church already, so I was by myself. I ended up calling 911 because of the stopping breathing too. Of course he did not have any seizures from the time the ER got here, till we got HOME from the ER 4 hours later. Then, he started having seizures again, probably because the Ativan I gave him was wearing off.

Since then we have started him on a very small, 1/2 tab which is 1/8gram of Clonazapine during the day, and he has not had any more seizures. We are still talking about changing Meds to Depokate, but it is likley to make him gain wait, and that is terrifying. The good news is, no new Seizures since Fathers Day, except the possitility of a non convulsive one that started on June 27th, the early morning we left for San Diego. I did not see him have one, and I was close to him, but he was all wobbly like he had one, but nothing more the rest of the day. Thank God! Well, gotta go give him his meds now. I will try to keep better at updating.

Love,
Willow

More Seizures...

Another seizure storm, although this one was less. He had two big seizures, on Sat night in the middle of the night, and another Sunday afternoon. The one on Sunday was longer, as he was not on any clonazapine at the time. It seems that he has either a bunch of small ones, or a few longer ones. Almost like he needs to get it out of his system. IF they are suppressed by the meds, there are more of them, but they are shorter. That's all for now.

Willow

A year of Seizures......

So since we lowered the meds, and tried to start new ones...... we have had SOOOOOOOO many seizures. I can't even begin to explain, but I have a pretty good reccord of them with the neurologist. But they are coming ever few weeks, this last bout, only one week apart. They come on like electrical storms...... it usually starts with him being wakeful the night before, and then the next day or night, he starts having seizures. Today is Wednesday, and he had 3 or 4 siezures yesterday, 2 bigger ones, and a few smaller ones. A week before on Tuesday he had about 4 too. He is on 5 25mg tabs of lamictal still, and 1mg of clonazapine at night, and then we give him ativan if he starts to sieze. I don't have the energy to talk much more about it, I'm quite emotionally exhausted, full of anxiety and stress. But I don't feel like reporting it to the neurologist every time he has seizures, because all she does is tell me to give him more meds...... more bandaid, and not looking into WHAT THE HELL IS GOING ON!!!

So I figured I better start recording them here on this site. I will try to write more detail later. Expecting a quiet night, it usually only goes on for 24 hours and then stops..... although the distance between is getting shorter and shorter.

Love,
Willow

We lowered the Meds

We lowered to meds (Lamictal) to half, per okay from his neurologist, as she said some of the things we were seeing were bad side effects, and any behavioral side effect we should lower or change the meds. We cut them in half, and it has been about a week. We are going to give it another week, and see how that seems, but I think I am leaning towards a time off meds before trying a different one. The neurologist say's that is risky as he has such an abnormal EEG that the likely hood of him having a seizure is high, but, I have never seen him have one outside of the stimulation of putting his eyes and head up to a old fashioned TV screen, so I think he's safe to be off of them for a few months. I feel like I see some improvement since coming off the meds, but Jason doesn't, and his teachers don't really either. He's still super impulsive and screams and cries a lot. Yesterday he flipped his desk over at school. :-( He's not going to be allowed to stay in a class like he's in with that kind of behavior.

I should probably start the homeopothy again...... probably. I'm not sure I see a huge difference between the homeopothy and now. He still has improvements in speech and interaction on a regular basis, but with day's of him going "crazy". Which if we were on the homeopothy we would just call a "healing reaction". He's made a lot of strides since getting on the meds, just like he did while on homeopothy. He's learned to swim, he's made attempts on a scooter and a bike, his speech and strings of speech and asking for what he wants is nothing short of amazing. But who's to say it's the meds, the homeopothy..... or just growing up? I'm thinking it's probably just growing up.

I will update if we go completely off the meds.

Love,
Willow

Updates on Meds and life.....

So we have been at full dose of Lamictal for a few months now. Pretty much since school started. I read over what I wrote last time, and I feel like he's on a downswing. He's still talking a ton, more clearly and longer sentences, but he's anxious and seems to get more easily upset. Church has been hard, he has a really hard time with noises and seems more sensitive to it. The last week and half or so he's been really tired. Sleeping a lot during the day, and still going to sleep a okay at night. We are having to really work on waking him up from his day time naps. This is new, he hasn't been napping during the day in a while.

His teacher said he was more impulsive this last week, which is a big deal because he's so impulsive as it is. He is having a hard time sitting at all. We took him to a restaurant last week, and he screamed and cried most of the time. He REALLY wanted Mac and Cheese, and then when we ordered it for him, he cried so much, that Jason took him out to McDonalds and got him a happy meal, because that seemed like the only thing that would make him happy. Micah and Elijah and I sat in the restaurant while Jason walked him over and got him a happy meal. He seemed okay after that. We had to go to Reno for Jason's mom's wedding. We went to Circus Circus, which is the ultimate overstimulating environment. He was a mess. He had a really hard time. He wanted to escape constantly, he wanted what he wanted, and if he didn't get it he cried. It was horrible.

The tic like behavior seems to be gone, as does most of his eye fluttering. We got this stuff that makes him not suck his thumb, but he bites his hand instead, not much better, almost worse.

He's also backed up right now, and were starting to give him more and more miralax. He has yet to pass the poop yet, and I'm hoping after he does he will be happier. He is eating less, and is less willing to eat things he does not want. He pushes it away and cries. His crying is so sad, his tears are so real and extreme.

That's all I have for now. We have a follow up Ped. Neurology appointment, but I think I'm going to cancel it and make a phone appointment. I don't want to drive out there just to talk to the lady. We can do that on the phone. I'm not sure what she will say. Maybe we should try a different med, or maybe lay off the meds for a while. I don't know. That's all for now, I'll write more as I think of it.

Love,
Willow